Changing opiods: I have severe restless... - Restless Legs Syn...

Restless Legs Syndrome

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Changing opiods

Trish8433 profile image
20 Replies

I have severe restless legs and have suffered for many years

Recently I came off pramipexole, after augmentation. I am now on Targin 40 mg daily, 15mg at 2pm and 25mg at 8pm. I still suffer from restless legs early in the morning, however it is far less intense. Having read many comments re the benefits of buprenorphine on this site, I recently spoke with my specialist. He is potentially agreeable for me to change opiods but is unaware of the process of substituting buprenorphine for the targin.

Does anyone have any experience of changing these two opiods.

I am very fortunate in Australia to have a very understanding Dr.

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Trish8433
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20 Replies
Joolsg profile image
Joolsg

Very simple. Straight swap overnight. Don't take your morning dose of Targinact and take Buprenorphine around 9pm.

Start with 0.4mg and if you get any breakthrough RLS the next morning or early evening, split the dose and take 0.2mg at 9pm and 0.2mg at 11pm or midnight.

I went from 25mg Oxycontin to 0.4mg Buprenorphine sub lingual pills.Have some medical cannabis or zofran ready. Buprenorphine causes nausea for many people for the first few weeks.

Trish8433 profile image
Trish8433 in reply toJoolsg

Hi Joel's and others.

Still waiting to see the GP re getting on Buprenorphine.

I have heard from my specialist though and given I am currently on 40mh oxycodone with naltrexone, he suggests I should get 6mg of buprenorphine.

I have been doing a bit more research as scares me changing tablets.

Should I be going onto straight buprenorphine or should it be Suboxine. I know Suboxine is buprenorphine with naloxone. However I understand these combinations have a different outcome.

I just want to be prepared for the discussion wity the GP.

I assume I also need modified release tablets???

I was also told ages ago by specialist that the naloxone was really to assist with constipation. Is this correct???

Many thanks as I could not do this on my own without the care and assistance from people who understand.

Trish8433 profile image
Trish8433 in reply toTrish8433

Read Joel as Jools- aautomatic orrection!!!

Joolsg profile image
Joolsg in reply toTrish8433

6mg is WAY too high. So double check. He probably means 0.6mg.The opioid dose equivalence of 40mg of Targinact ( Oxycontin with naloxone) is around 0.6mg of Buprenorphine.

You do NOT need the naloxone component. That is, as you correctly state, to prevent constipation.

If constipation isn't an issue, you can just take normal, generic Buprenorphine pills. They start at 0.2mg and come in 0.4mg and 0.8mg sublingual pills.

Subutex is the usual brand that combines Buprenorphine with Naloxone. If constipation is an issue, then you could take that. Or use magnesium citrate at night as a laxative.

There is no modified release pill because Buprenorphine pills have a very long half life of 25 hours. That's why they work so well for RLS. They don't cause the mini opioid withdrawals during the day that Oxycontin causes. Oxycontin has a short half life of around 5 to 6 hours. That's way most RLS patients have to take it regularly throughout the 24 hour day.

Buprenorphine also comes in a skin patch, which releases an even amount of Buprenorphine every hour over 24 hours. But the patch can cause skin irritation and many people report it stops working at day 4, instead of the 7 days it is supposed to last. That's why the majority of RLS patients seem to do better on the pills.

Buprenorphine can cause severe nausea for the first 10 to 14 days, so have safe anti nausea meds ready. I used cannabis oil with 25% THC as chemotherapy patients use it for nausea. It worked brilliantly for me.

Other side effects are sweats, constipation and racing heart. I take a small dose of pregabalin to help reduce opioid anxiety and sweats.

Trish8433 profile image
Trish8433 in reply toJoolsg

Thank you Joolsg, you are a gem. I would feel SO isolated without this support group. Makes me wonder what everyone else in Australia is doing and makes me feel I should be helping Australian's in some way, especially given that I recently went to the two key neurologists in Perth and they BOTH said they only treat people, especially with severe restless legs with premapaxil!!!

You and others in the group are life savers . I will let you know how I go.

Many, many thanks.

Trish

Joolsg profile image
Joolsg in reply toTrish8433

I honestly think ALL dopamine agonists will be banned for RLS within 10 years.Big pharma will fight tooth & nail to prevent that and they have a lot of sway over neurologists worldwide.

But one day, neurologists will finally accept that dopamine agonists are just too dangerous.

Madlegs1 profile image
Madlegs1

The reason you are experiencing RLS in the morning is because you are not taking opioids evenly over the 24 hrs.

You are suffering mini withdrawal symptoms.

By all means change to buprenorphine, but don't be blaming your current medications for your doctors bad practice.

Good luck.

LotteM profile image
LotteM

I second Jools. I also made a straight swap from oxycontin (Targin is oxycontin plus nalexone) to buprenorphine. Worked wonders. Blissful sleep. Almost unbelievable.

Dosing as recommended Joolsg seems fine, I was on lower oxycontin and buprenorphine doses. Just want to add: if one 0.4mg buprenorphine is not enough, add half pills instead of whole ones. You can use a sharp knife or ask the pharmacist for a pill cutter. Always best to find the lowest effective dose.

Oh, and yes, I had that too on oxycontin, what Madlegs described about mini-withdrawal in the morning. Hence the need to switch to an opioid with far longer half life. I also had it on the buprenorphine pills, but my dose was lower (0.2mg). Hopefully the doctor agree and then see how it goes. Good luck!

Sausewind profile image
Sausewind in reply toLotteM

Hello Lotte, did you have sideeffects from the buprenorphine? Greetings Sandra

LotteM profile image
LotteM in reply toSausewind

I did and do, but they are mild. No nausea, but I do experience sweats and fatigue. No nausea. And I had mini-withdrawal in the morning when on 0.2mg sublingual tablets. Only very few people reported that too.

wildlegs profile image
wildlegs

hi Trish I’m Mike, 80, from the USA. I’ve had RLS for 25 plus years. I’ve had great results with Tramadol but doctors here are hesitant about giving me Tramadol because it’s an opioid. I now take one mg of pramipexole and 100 mg of Tramadol , for two years now, and the results are great no more RLS and no side effects. I hear from our fellow readers that when I go off I’ll have terrible problems. But at 80 I’ve got no plans of getting off of something that works for me. Good luck on whatever you decide to do.

Bantamdyno profile image
Bantamdyno

have you seen my posts🤔

Trish8433 profile image
Trish8433

Thanks so much for comments everyone. It is so beneficial to have information to discuss with the Dr.

Re my current times to take targin. We did lots of experimenting to see how to make the drug work. Taking it at 2pm and 8pm provided the best coverage with only limited breakthrough Rls. By taking targin 12 hrs apart (or breaking into smaller amounts and more frequent times)I had much more severe symptoms . Will let you know the outcome once I meet with the Dr again.

The support from this group has kept me sane. Thank you. I wonder why a similar, or offshoot group, has not been established in Australia?

Bantamdyno profile image
Bantamdyno in reply toTrish8433

Hi, see my posts if you want to control rls🤔

Trish8433 profile image
Trish8433 in reply toBantamdyno

Thank you. I have read your posts. The issue with restless legs is although some treatments work for most, many only help a few. Like you I have tried many things over 40 years, until now, I am on opiods and anti depressants. This provides more control than I have had for years where my restless legs was all over my body and severe, all night, every night. I NEVER want to go there again.Inflamation and burning have been a big issue over the past two years but I have this mainly controlled by rose hip tablets, interestingly prescribed by by medical specialist.

Bantamdyno profile image
Bantamdyno in reply toTrish8433

Yes but have you found the triga paints🤔

Trish8433 profile image
Trish8433

Dear all, especially Joolsg and LotteM. Not as easy as I thought it would be, especially in Australia, changing from Targin (40mg per day) to buprenorphine.

Did you mean patches or tablets? Also should the buprenorphine include Naloxone?

I am still waiting to hear back from my specialist but just want to have as much information as possible.

It is always so scary changing medication with Severe restless legs as I am sure you are all very aware of.

Many thanks for your help and support.

Trish8433 profile image
Trish8433

Just to update everyone regarding changing opiods from targin (40mg) to buprenorphine (.6mg per day). Many thanks to everyone here, and great advice, particularly Joolsg . I have had severe restless legs for 40 plus years . Like others, lots of frustration, depression and suicidal thoughts.

As suggested I made a direct swap from Targin to buprenorphine 4 weeks ago. Amazing outcome, and immediately stopped the Rls. No sickness however, lots of sweating - but if this is the only side effect, I can get over it. In Australia, it was no issue at all getting the medication and I have a very understanding specialist and a very supportive GP who readily says she knows nothing about rls but prepared to listen and learn from the information provided from this group.

I feel normal, for the first time in 5 years. I have also stopped the antidepressant s.

There is hope.

Thank you everyone.

707twitcher profile image
707twitcher

👏👏👏

Satchmocat profile image
Satchmocat

Hello, Trish & Everyone. Satchmocat here. I’ve been away for a while . Regarding RLS, my doctor, having read the printout I gave him, decided to put me on low- dose Naltrexone- 1.5 mg - to counteract the augmentation caused by 13 years on pramipexole now up to 1.5 mg daily. Mine only happens in the daytime. It apparently will help the effacacy of the cannabis oil so we’ll see. At this early stage, I seem to be improving but time will tell. Good luck to all suffering this awful disease & to you, Trish.

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